Advice for Parents: Part 1- Newly Diagnosisd Child w/ SB

Being a new parent is hard enough, let alone learning that your perfect baby has Spina Bifida. (*Note, I believe every baby is perfect in their own way!) Whether you find out during your pregnancy or when you deliver, the information the medical community provides you with is very over-whelming. Most people have never really heard of SB, let alone thinking it could possibly happen to their child. Then they start giving you a bunch of statistics and advice on what to do and how to treat the child. This could entail, but is not limited to, multiple surgeries – sometimes even before you get to take your beautiful baby home. They may also place your baby in the NICU for either a predetermined amount of time or until they think the little one is safe to go home. So many things happen after the delivery that starts to put some parents into panic or survival mode. Being inundated with so much information and surgical intervention can cause a lot of stress, anxiety, and even depression for new parents.

I believe that the medical community does not inform parents correctly and overwhelms them too much that they are at a loss of what to do next. All you want is to hold your baby in your arms and be able to bring them home so you can start adjusting to having your baby. I also believe that some of the information the medical community provides you is incorrect or misleading, which then could lead to being pressured into doing something that might not be necessary. This may come directly after delivery or later down the road as your child grows.

What can we, as adults with SB, do to help new parents with the diagnosis and educate them about SB and what might happen in the future, depending on the level and degree of SB the child possesses?? I have compiled some advice I would give to new parents with a child diagnosed with SB. (This is my first part of the series!)

1. First and most important is to stay calm. As hard as it sounds, staying calm will help you retain information and not cloud your judgment on what may be best for your child throughout the years.

2. Understand that doctors do not know everything about SB. They have an idea, especially when it comes to pediatric cases, but not a full understanding about the future and what it may hold for your child.

3. This diagnosis is not your fault as a parent. Most likely you did not know you were pregnant until well after the first 28-30 days of your pregnancy and in that time frame is when SB develops.

4. Folic acid. (This part irritates me!) While there may be great studies out there that state SB is caused by lack of folic acid during your pregnancy, that is not the reason in most cases of SB. They have barely scratched the surface in explaining why SB happens and treatments needed throughout the patients lifetime!

5. Research SB. Not only through medical journals, because they use so much medical jargon you might not understand, but through other means. Getting together with the SBA and find a chapter close to you so you can interact with other parents and individuals with SB. Also, social media is a great tool but can also lead to disappointment due to people who refuse to be positive and encouraging to others whom have SB and their families.

6. Remember, SB is also referred to as the “Snowflake” birth defect. Just as two snowflakes are not the same, there are also never two SB cases the same either. Even though the lesion might be at the same level, other factors are involved and the treatments will be different because of those other factors.

7. Do not accept everything the doctors say about the abilities or non-abilities your child may or may not posses in the future. Always remain optimistic!!! This will get you further in life, but also while going through your child’s treatments. Being optimistic during the roughest times, will also help your child’s state of mind as they grow up and start to fully understand SB. They will absorb your optimism and apply that throughout their lifetime.

8. When you get overwhelmed, frustrated, angry, stressed, etc. have an outlet to get rid of those feelings, but not in front of your child. Go to the gym, take a walk, use a punching bag that is set up somewhere out of the way, or even speak with a therapist. Find some way to relieve what ever you may be feeling in a productive way!